Radiation, The Sequel

In June/July of 2002, I did 6 weeks of radiation to fight my tumor. I found out recently that I was administered 6,300 rads (not sure exactly what that means) and apparently that is a lot. At the time, and for roughly 12 years after, I was told that I had been given as much radiation as my body could handle for the rest of my life. It would never again be a treatment option for me. 

 

Those doctors did not expect me to live another 13 years. On July 21st, I started 10 days of radiation and tomorrow is my last day. My radiation doctor at Kaiser, Dr Nguyen, is treating me with 3000 rads of a more updated version of radiation that would be the equivalent of 4000 rads of the kind I was given in 2002, so about 2/3 of the dose I first received. 

 

So far, so good :) I'm not feeling much noticeable fatigue yet, but I can expect to in the very near future. Luckily, fatigue & hair loss are the only serious side effects I should expect. Otherwise, I've had a few minor headaches, but nothing a couple Tylenol can't handle. 

 

I'm very lucky that my doctor has agreed to treat me. It is industry standard to not re-radiate, but my doctor warned me of the risks and my family and I agreed that the potential benefits outweigh the possibly serious risks. Dr Nguyen feels confident that she made a plan that will avoid interfering with my vision center & a couple other critical areas that control my breathing and other life-sustaining functions. There is a chance though that I may experience more weakness in my left arm and possibly other unexpected effects. 

 

The reality is, though, that I have a brain tumor.  Whether it is radiation that causes it a little sooner, or the tumor itself just growing unchecked, I am going to experience physical and possibly cognitive issues with time.  I came to terms with this a long time ago.  I would rather be aggressive and hopefully give me a few more years while they're coming up with some really promising new treatments for cancer, than just sitting back and waiting for it to kill me without putting up a fight.  I may get some scars in my various battles, but I feel confident that I at least have a shot at eventually winning the war.  

 

The reason that doing radiation right now is so important was explained to me by my neurologist like this...

When the doctors thought I had a glioblastoma, you could think of it like Lake Tahoe: huge (aggressive and fast growing) but with a well-defined border. The tumor that I actually have, an oligodendroglioma, is more like Lake Shasta: shallow (slow growing) but with a bunch of little fingers that go off in all directions (in my brain). Those little fingers are impossible to remove through surgery, so the hope is that radiating the areas surrounding my brain will get a bunch of those fingers. 

 

I think that a lot of people who  have been lucky enough to not have had to deal with cancer treatments are often not sure exactly what is meant by chemo and radiation, so here is a quick Cancer Treatment 101:

 

Chemotherapy: Cancer treatment using chemicals, usually administered through an IV or orally by pills.  Because it gets into your bloodstream, it goes throughout your body.  However, different types of chemo are more or less effective at getting to and treating different parts of the body.  The types of chemo that cause hair loss and nausea do so because they are made to attack rapidly dividing cells, such as hair cells (hair loss), those that line your digestive tract (nausea) and cancer cells.  Luckily, most of the chemo I've done was oral and I had very few side effects.  I didn't lose my hair from it and I could tolerate any sickness by taking an anti nausea medication.  Unfortunately, in treating brain tumors, there is what is known as the "blood/brain barrier" which is a defense system in our bodies to help protect the brain.  However, it also makes chemotherapy administered through the blood, largely ineffective on brain tumors.  I just happened to get a type of tumor that responds to chemo better than many types.  In a way, I guess you could make an argument that I've been fortunate.

 

Radiation: You can think of radiation more like an Xray.  You can't see it or feel it, but it is somehow attacking cancer cells, but also healthy normal cells that are in its path.  I picture it like a laser beam out of a comic book, frying my tumor and leaving behind an empty crater where it used to be :)  Radiation oncologists have to make a plan to radiate as much of the tumor as possible while avoiding other critical, healthy areas.  To make sure that only the exact area that Dr. Nguyen determined is safe to receive radiation for each of my 10 treatments, it is critical that my head is in exactly the same position each time.  My wonderful technicians ensured this by creating a mask that attaches to the table I'm laying on.  Prior to treatment, they took a plastic mesh material that becomes pliable when wet and stretched it down over my face, forming it to my nose, chin and eye sockets, then waited for it to dry and harden again.  Thank goodness I'm not claustrophobic or I'd have some serious issues!Check out these pictures of my medieval torture device...

 

  

They use lasers to line up targets on the mask to make sure that everything is in place every time.  The whole process only takes about 10 minutes, from walking in the room to walking out, and I just close my eyes and hear that machine in the background moving around my head as well as whatever music they're playing that day. My first day it was a Christmas song, then a few days of elevator music, then Friday it was 80's soft rock :)  I have to give a shout out to my techs because they are so awesome and keep me smiling and laughing!  I'm definitely going to miss seeing them every day!

 

 

Not Again!!!

So exactly 1 month ago, I experienced just about the scariest event of my life.  On Friday, June 12th, my parents and I were on a road trip to Santa Barbara to see my nephew, Mason, graduate from UCSB.  I wasn't feeling well, dizzy and really tired, and attributed it to my brain surgery just 5 weeks earlier.

We got to Solvang, a town we were staying in about 30 minutes from Santa Barbara, and I was just getting worse.  I was really dizzy and my parents had to help me up to our hotel room.  I just took it easy that night and went to sleep early.  Saturday I got up for a while to try to be social because my whole family was there for the graduation, but I ended up sleeping most of the day.  Mind you, I had been sleeping a lot after my surgery, so this wasn't too odd given the previous few weeks.  However, Saturday night, things started to get really scary. I couldn't even stand up on my own and my speech was slurred.  I think I slept a little that night, but by early Sunday morning, I could barely speak and I couldn't stand up at all and we finally called 911.  I was taken to a hospital in Santa Barbara, they did a CT scan of my brain and realized that I had a subdural hematoma, or brain bleed, and needed emergency surgery to relieve the pressure of all the extra blood pressing on my brain.

My recovery from this second surgery has been a lot harder than my previous one.  I had headaches and nearly daily seizures for the first couple weeks.  Any gains I had made in terms of walking have pretty much been erased, though I'm not giving up, doing my exercises in the hope that I'll get some strength back in my leg.  My left arm is significantly weaker than it was and I think the connection between my brain and my left arm has been further disrupted because I have to sort of remind myself that my hand is there.  I keep burning myself on pans and regularly drop things because I simply forget that my hand exists.  It's a very strange phenomenon!  I know it sounds horrible, but it's actually kind of funny and we joke about it.  I'm also doing physical therapy to try to restore some connections between my brain and arm.

The really strange part of it all is that my brain bleed was basically unrelated to my previous brain surgery!  I have been taking blood thinners for years and I had to stop taking them before my first surgery.  When I resumed taking them, 2 weeks prior to our trip to Santa Barbara, I was told to take the same dose I was taking prior to surgery.  Well, it turns out that dose was way too high.  With blood thinners, you need to have your blood monitored regularly because all kinds of things really affect your ability to form clots including diet, alcohol and changes in medication.  I don't drink anymore, mostly because of my blood thinners, but my diet after surgery was very different from prior to it and my medications had changed significantly.  With the level that my blood was at, I could have had the brain bleed anytime, anywhere, regardless of my prior surgery.

So yeah, I had 2 brain surgeries within 5 weeks.  I was pretty bummed after the second one because I thought I'd never feel like myself again or be able to drive again or really have any independence.  However, things have really turned around in the last week or so.  My stamina is getting much closer to normal and I'm not sleeping nearly as much (hence, why I'm writing this post at 3:00am).  I've had a few outings to Sacramento and Jackson and think I might be ready to start driving again soon :)  Life feels like its getting back to normal and I may be able to start thinking about moving out again within a few months.  Only time will tell, but I'm feeling optimistic! 

A year and a half?!?

Ok, I think it is a well established fact that I am a horrible blogger. It's been a year and a half since my last post! When I think about it though, there was a good reason for the lack of updates... not much happened in terms of my health in that time :) 


If you read my last post from Nov, 2013, I mentioned that we were thinking about trying a chemo called CCNU. I did, in fact, do 3 rounds of CCNU, between Nov, 2013 and Feb, 2014. After my Feb dose, my tumor had been stable for a while and my doctors thought I should hold off doing more chemo because my blood counts were really low and I was experiencing MAJOR fatigue. We decided to just monitor it with MRI's. Luckily, it remained stable for a year and we didn't see growth on an MRI until Feb, 2015. 


The last few months have been pretty crazy trying to figure out what treatment to do to stop any further growth. It started with my Kaiser oncologist, Dr. Grennan, introducing us to a new member of Kaiser's oncology team, Dr. Lallana, a neuro oncologist, specializing in brain tumors. At our first meeting, Dr. Lallana suggested that surgery on my tumor might be an option now, after we had been told for 13 years that my tumor was inoperable. About a year earlier a neuro surgeon at UCSF had done a computer simulation of surgery on my tumor and he thought that they wouldn't be able to remove enough tumor to offset the risks involved. So naturally we were really skeptical of Dr. Lallana's seemingly rogue, even dangerous suggestion. However, after some urging, he talked us into meeting with Dr. Jian, a neuro surgeon at Kaiser, and thank goodness that we did!

My parents and I found Dr. Jian to be a straight-shooter who had perfectly reasonable answers to all of our questions (and we had a lot of them!). He went into great detail about how he would perform the surgery and it was truly fascinating. 

Prior to meeting with him in March, I had done a functional MRI where I was asked to move my hands and do some cognitive exercises where I would look at a screen and have to think of the word that would finish a sentence or think of as many words as I could that start with a particular letter. It was pretty crazy because they were able to see where in my brain these functions take place to give Dr. Jian an idea of where he could safely cut. My tumor straddles my right frontal and parietal lobes, about even with my right ear, I think roughly 1-2 centimeters from the top of my head and it backs up to the center of my brain. He showed us a purple arc that went around my tumor, out toward my ear, that indicated where my arm function was. He said that given this information, he would go down, between my right and left hemispheres and remove tumor from that direction, cutting from the center of my brain out toward my ear, to avoid the area that controls my arm movement. He would have the anaesthesiologist put me fully under while they prepped me and he opened my cranium (creepy, right?!?), then wake me up to a "twilight" sleep where I'd be really groggy and wouldn't feel any pain in my head, but could talk to them and answer questions. He would use an electrode to stimulate different areas around my tumor and ask if I felt any sensations in my arm or just ask me questions to make sure I could still understand him and talk. This way, he'd able able to "map" out where it was safe to cut before actually cutting. He told us that technically, no tumor is "inoperable", it's just a matter of how much risk you are willing to take. I told him that I would want to be able to walk out of the hospital and in basically the same cognitive state that I entered it. He thought that was a reasonable request and said that he would just close me up if he didn't think he could safely deliver that.

It was nerve-wracking waiting for surgery to be scheduled, but they had to coordinate 2 neuro surgeons, an anaesthesiologist, an operating room and a bunch of nurses for an entire day so it took a couple weeks before we knew my surgery date. In the end, I had surgery on May 7th. It was about 8 hours long and apparently there were 11 people in the OR! I was the first into surgery that day and the last out. My mom said Dr. Jian called them into the "quiet room" after surgery and she was sure he was going to tell them that I didn't make it, but instead he told them he estimated that he had removed 80%-90% of the tumor and that I was in recovery and doing well :) I was discharged on the 10th and, true to his word, I was walking around the hospital just a couple days after surgery! 



Harley, Dena, me and Mom 2 days after surgery

There has always been some controversy about what type of tumor I have. After my original biopsy in 2002, using a Stanford pathologist, Kaiser told me I had an oligodendroglioma (I know, quite a mouthful). This type of tumor tends to be slow-growing and, while it's still a brain tumor, it responds well to chemotherapy and radiation. However, UC San Francisco looked at the pathology as well and thought it was a grade IV glioblastoma, basically the nuclear bomb of brain tumors. Over the years, the doctors have treated me as though it is the more aggressive type of tumor, but, as it turns out, pathology on the tumor that was removed confirmed that it is a grade III oligodendroglioma. This explains why I've responded so well to the treatments I've done and why I am still alive.

Way beyond my wildest expectations, I have regained some of the strength I lost in my left leg 5 years ago!!! I have started doing physical therapy and am still nowhere near walking normally, but I can now walk cautiously without wearing my brace and using my cane. I seem to have a little more weakness in my left arm than before surgery, but that could even diminish as swelling from surgery goes down and I do my physical therapy exercises.

We did have a little scare a couple days after I got home. Mom had a friend over for lunch and my dad had a couple friends over later that afternoon and while they were here, I started feeling weird and confused. It occurred to me that it felt like one of the seizures I have had occasionally over the years, but, having just had brain surgery, I was scared that it might be some sort of complication or a stroke or something worse than a seizure. We went to the emergency room and luckily, they ruled out anything bad and it turns out it was just a seizure, apparently pretty common after brain surgery, but nobody had warned us. I continued having about 1 seizure a day for a few days, but forcing myself to rest more and increasing my seizure medication has taken care of that and I've been seizure free for a couple weeks now :)

I am now rocking a bald head and kind of digging it. I look like an extra in the new Mad Max movie! Plus my showering and primping times are about half of what they used to be :)


Mom shaving my remaining "comb over"

Bye bye hair

 

G.I. Laurie?

Or Franken Laurie?
 

Today we had an appointment with a radiation oncologist, Dr. Nguyen. Prior to surgery, she had said that doing radiation again was possibly a good option to get the remaining tumor that the surgeon was unable to remove. This was exciting news for us because we had always been told that doing radiation again would never be an option. We were told, when I did it in 2002, that I had done as much as my brain could take in my lifetime. However, having a brain tumor, I don't think anyone expected my lifetime to be 13 more years and my doctors now thought any damage done from the initial radiation would have healed so re-irradiating might be possible. Today though, the radiation oncologist said that after getting all of the information from my earlier radiation, apparently I was given a higher dose than she had expected and the chances of side effects are higher than what she originally thought. I had a CT scan today and she is going to try to "map" a radiation plan to see if she can administer more radiation relatively safely.  

Although it feels like it's been a long, slow recovery, it hasn't even been 4 weeks yet and I'm feeling pretty close to my pre-operation energy level. I have to rest and I take naps fairly regularly, but every day my required down time is getting shorter and my stamina is increasing. If I do end up doing more radiation, I can expect that to really zap my energy again, but this surgery and radiation could potentially give me several more years, so I can handle a few weeks of fatigue. My surgeon even said that if it grows significantly again, he could go in and remove more! Every year they've kept me alive is another year that they're coming up with new, innovative ways to treat cancer and I plan on fighting this thing with everything I've got!